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Home care charges – the injustice continues

The severe impact of local authority home care charges is an overlooked injustice faced by large numbers of disabled people in England.  The hardship caused by these charges has been covered in previous posts – see The charging regulations and injustice, Pet care costs and social care charges and Charges for community care.

The charging rules introduced in England by the Care Act 2014 mean that many adults who are reliant on social security payments are pushed even deeper into poverty when their impairments are so severe that they are deemed eligible for support from social services.  Research undertaken by Cerebra and the School of Law, Leeds University in 2018[1] found that this could result in a disabled person being expected to live on less than £50 per week – from which they were expected to pay for (among other things) their food, gas, water, electricity, telephone bills, travel costs, clothing, house repairs, equipment purchase, insurance expenses and recreational activities.  Although councils are not legally obliged to make such charges, the Local Government and Social Care Ombudsman has shown little interest in complaints made by disabled people who have been reduced to penury by these charges – where the council has followed the ‘correct procedures’[2] – and this injustice continues.

Here is an account by a parent of an adult disabled person of her experiences of the charging process.

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My daughter is 30 years old and has a diagnosis of autism, moderate learning disability, short term memory problems and type 1 diabetes. She has extensive joint problems which have resulted in a full hip replacement, reconstruction surgery and recent back surgery. She also has mild cerebral palsy, joint hypermobility, asthma and high blood pressure.

As a result of her conditions she has been assessed as requiring 40 hours of care per week and has support from a Personal Assistant. My daughter has very little money to live on a week as the council have continued to assert that a number of her costs do not form part of her Disability Related Expenditure (DRE). The council claim that her Employment Support Allowance and Personal Independence Payments cover the cost of her living but I strongly disagree with this.

One particular cost that the council do not accept as DRE is her pet dog and the associated costs. She pays approximately £45 per week on food, vet needs and insurance. The insurance is necessary for him and a requirement for dogs registered as Pets as Therapy Dogs, which he is. We do not want this to be paid for, but regarded as DRE. A pet is an extremely important part of a person’s life … he is her life.

When she was younger, she used to act like a dog when her anxieties were very high. This gradually subsided as she grew and we got a dog for her. It was virtually impossible to get a support dog as they were not available for autism years ago. When our previous dog died, my daughter became very depressed and socially isolated because she would not go out or even be by herself without a dog. Now she has a dog again, she is able to do lots of things with him and her life revolves around him. Her support care plan even expresses how necessary the dog is in terms of a form of therapy, helping her to get out into the community and socialise.  She can also only carry out her volunteer work when her dog is with her.

The council are also refusing to accept that my daughter’s mobile phone costs of £30 per month constitutes DRE. She uses her mobile phone to contact me when she is anxious or when she doesn’t know what meals to eat if her blood sugars drop too low. The council claim it is the PA’s responsibilities to manage her anxieties and provide support. However, there are several times when she needs to call me or other family members for support when the PAs are not there.

Swimming therapy has also been recommended by pain management teams, a physiotherapist and a consultant. However the council have also refused to consider the membership fee as a disability related expenditure.

I feel extremely frustrated by the council’s approach in my daughter’s case as these expenses are very much needed for my daughter to have a quality of life and to enhance her independence and wellbeing. I was angry, upset and disappointed when I received a response to my complaint to the Local Government and Social Care Ombudsman which concluded that the council were following the law as they had considered the charges but concluded that my daughter’s dog and mobile phone had no direct link to her disability.

It is highly unacceptable for councils to be so rigid in their approach and for there to be no way of holding them to account for all the stress this causes on families and the hardship disabled people face as a result.

We are trying to plan for the future, my daughter is 30 years old and we are trying to promote some independence to allow her more confidence and self-esteem. Pets are recognised as being a huge part of people’s lives, especially people with any types of disability.  She has many health difficulties as well as learning disability and autism. A lot of her health will deteriorate as she gets older. We need to ensure that she gets the right support and is treated with respect and dignity, especially when we are no longer able to do what we do.

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[1] L Clements and S McCormack Disability related expenditure and pets care costs (Cerebra 2018).
[2] The ombudsman appears to take the view that if the standard formula for assessing charges has been followed – then even if the resultant charge is severe – he will not question the decision of a council to exercise its discretion to apply the charge – see for example Complaint no 18 019 993 against Nottinghamshire County Council 14 October 2019.

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